BackgroundMalnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.MethodsThis mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.ResultsOf the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.ConclusionsWomen and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

We are very uncertain whether HPN improves survival or quality of life in people with MBO as the certainty of evidence was very low for both outcomes. As the evidence base is limited and at high risk of bias, further higher-quality prospective studies are required.

Background Malnutrition is a problem is advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. Methods This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n=57) were carried out with 20 women considered for HPN and 15 of their family caregivers. Results Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8 - 506) and for those 17 on HPN was 156 days (range 46 – 506). Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

Peer reviewed versionCyswllt i'r cyhoeddiad / Link to publication Dyfyniad o'r fersiwn a gyhoeddwyd / Citation for published version (APA): Singh Curry, R., Evans, E., Raftery, A-M., Hiscock, J., & Poolman, M. (2019). Percutaneous venting gastrostomy/gastrojejunostomy for malignant bowel obstruction: a qualitative study. BMJ Supportive and Palliative Care, 9(4), 381-388. https://doi. Abstract ObjectiveMalignant Bowel Obstruction (MBO) is a complication of advanced malignancy and is associated with a short prognosis. MBO can infrequently be reversed by surgery or stenting. The focus of treatment is usually symptomatic management, of which percutaneous venting gastrostomy/gastrojejunostomy (PVG) is one consideration. There is little data considering the impact of PVG on quality of life; we therefore aimed to explore this. MethodsWe identified patients with PVG inserted for MBO and those who consented to participate were interviewed. The interviews were audio-recorded, transcribed and analysed using Framework. Alongside patient interviews, a data collection tool was designed and utilised to record patient demographics and medical information, enabling us to contextualise individual patients' experiences.Results 11 patients were interviewed and 10 patients' data was analysed (1 patient withdrew). No patients regretted having a PVG and many benefitted symptomatically and psychosocially. Challenges encountered included practical issues, pain and PVG tube complications. ConclusionsThe analysis provided a detailed insight into the impact of PVG insertion and demonstrated that each patients' experience is shaped by a complex interplay of individual factors, thereby highlighting the need to improve referral criteria and individualise patient selection. Other service improvements include enhancing information provision for patients and training for Healthcare Professionals', thus aiming to mitigate the challenges experienced. Our study is the first in-depth exploration of patients' experiences of PVG at a tertiary cancer centre. Ensuring that the insights from this study are fed back to guide future service provision is critical in enhancing future patient experiences.

Recent publications regarding nutrition highlight the importance of eating and drinking for patients and their family/carer. This article focuses on the importance of nutrition and early nutritional intervention, giving guidance for nurses when caring for patients with palliative and end-of-life care needs when the focus of nutrition centres around symptom control and quality of life. Clear, sensitive communication, with agreed nutritional goals set with the patient and their family/carer, and regular review and adaptation throughout any 'cancer journey' are paramount in order to minimise anxiety and distress. A multidisciplinary team approach is often required in order to support ethical decision-making and to assist in devising an individualised nutritional management plan. Although this article aims to focus upon the nutritional aspects associated with advancing cancer, many aspects will clearly be transferrable to patients with other life-limiting illnesses such as dementia and advanced cardiac and pulmonary disease.